Stakeholder engagement in Value Based Pricing and Value Based Assessment

Some have argued that patients’ contributions to the debate on Value Based Assessment (VBA), the approach that emerged from much earlier discussions on Value Based Pricing (VBP), have been ‘lacking’, so who has been involved in these discussions?

Value Based Pricing

The Department of Health (DH) first consulted on VBP in 2010. That consultation was the result of work behind the scenes following the promise of reform made by the Conservatives in their 2010 General Election Manifesto and then formalised by the Coalition Government.

The DH ran a number of workshops to develop its embryonic ideas for VBP, including organisations ranging from industry to patient groups. That was followed by 154 responses to the formal VBP consultation.

Value Based Assessment

Health watchdog NICE was given the tricky job of taking forward what had by then turned into Value Based Assessment (VBA) in the spring of 2013. It was passed on to a Working Group, led by Prof Andrew Stevens (also a chair of one of NICE’s Appraisal Committees) and with membership including industry, academics and patient groups (Prostate Cancer UK, Breakthrough Breast Cancer, Myeloma UK), plus another joined the meetings when others couldn’t attend (James Whale Fund for Kidney Cancer).

Just like the DH, NICE too ran broader meetings to engage, with a patient group meeting in central London in May of this year, a professional and NHS stakeholder engagement meeting also in May and in London, and a TAR team engagement meeting in Manchester in June.

NICE received a host of responses to the consultation to change the methods of Technology Appraisal to bring in VBA. Board papers say 121 organisations and individuals told NICE just what they thought.

Increasing patient engagement, falling NHS engagement

Comparing formal engagement for both VBP and VBA from consultation responses suggests that, instead of patient engagement being lacking, it has actually increased over time. And as VBA became a technical issue, responses from academics increased too. In contrast, engagement from the NHS is falling (figure 1).

The drop in engagement from the NHS could be down to a host of reasons, not least the on-going distraction resulting from the Health and Social Care Act 2012 and the unprecedented financial challenges facing the NHS.

Figure 1: Number of responses to VBP and VBA consultations by stakeholder group

Source: Analysis of DH1, 2011 and NICE2.

Some of the patient groups have also been vocal for some time; Cancer52 has put out papers on VBP and VBA since September 2013, as has Myeloma UK. Others spoke out earlier, including Macmillan and Prostate Cancer UK (in conjunction with a host of other patient organisations). And that’s just the public debate and discussion. Undoubtedly there are behind-the-scenes conversations going on too. Cancer52 has even made access to medicines part of its Manifesto for the 2015 General Election.

As it turned out, being a patient or any other stakeholder seems to have made little difference to the views on VBA as proposed by NICE. The majority of organisations just said ‘no’ to most of the questions from NICE, for example:

• 59 per cent said no to proposals on using the Quality Adjusted Life Year (QALY) shortfall as a proxy for the wider societal impact of a condition

• 72 per cent said no when asked if the proposals would improve consistency.

And every single one said that risks would result from the changes. That has meant that NICE has essentially left things just as they are, but it is planning a much bigger debate about medicines and innovation after the General Election in May 2015.

Patients will be influential in future reforms

The dynamic is clearly changing, with patient groups now outnumbering even the NHS and its various arms-length agencies in responses. Patient groups are likely to play an influential role in any future decisions about reform that will affect access to new medicines. The question now is, just what will that reform be?

Leela Barham is an independent health economist and policy expert who has worked with all stakeholders across the health care system, both in the UK and internationally. Leela works on a variety of issues: from the health and wellbeing of NHS staff to pricing and reimbursement of medicines and policies such as the Cancer Drugs Fund and Patient Access Schemes. Find out more here and you can contact Leela on leels@btinternet.com